Texas Bleeding Disorders Coalition

Behind every policy is a family

We are the statewide voice for Texans with hemophilia, von Willebrand disease and other bleeding disorders — at the Capitol, at the agencies, and with the health plans that decide what care people can reach.

Take action See our priorities

Texas has roughly 3,200 people living with hemophilia and another 315,000 with von Willebrand disease. Most of the decisions that shape their care are made in Austin.

Write to your lawmaker Find who represents you in the Texas House and Senate, and what to say in ninety seconds. Take action → Come to Austin Days Our day at the Capitol. The talking points, the do's and don'ts, and what a meeting is actually like. Get ready → New to bleeding disorders What these conditions are, how they are treated, and where in Texas to get specialist care. Start here →

Bleeding disorders in Texas

This is who the policy is about

3,200 Texans living with hemophilia
315,000 Texans living with von Willebrand disease — most of them undiagnosed
7 Hemophilia Treatment Centers in the entire state
16 years Average wait between a woman's first symptoms and her diagnosis

State estimates drawn from Centers for Disease Control data and US Census population figures. See the full statistics, sources and treatment centre list →

Why access matters

Every year on this timeline was fought for

Eighty years of research turned a childhood disease into a manageable lifelong condition. Every one of those advances still has to reach the people who need it.

Before 1938
Life expectancy11 years
TreatmentNone
Before 1968
Life expectancy20 years
TreatmentPlasma or whole blood transfusions
1968
Life expectancyUnder 40 years
TreatmentCryoprecipitate
1983
Life expectancy40 years
TreatmentFreeze-dried clotting factors
1988
Life expectancyFalls sharply — HIV and hepatitis in the blood supply
TreatmentFreeze-dried clotting factors, now heat-treated
1999
Life expectancyApproaching normal
TreatmentRecombinant clotting factor
Today
Life expectancyNormal lifespan
TreatmentNon-factor therapies and FDA-approved gene therapy

The 1980s contamination of the blood supply killed thousands of people with hemophilia. It is the reason this community treats questions about product choice and supply as questions about survival.

The Legislature meets again in January 2027

Between now and then, the decisions that matter happen in agency meetings and drug utilization reviews that almost nobody attends. We will tell you when your voice is needed, and exactly what to say.

Take action Join our alert list

Who we are

Founded in 2013 by Texas's bleeding disorders chapters and treatment centres, the Coalition is one of the National Bleeding Disorders Foundation's designated advocacy centres.

We work on one thing: that every Texan with a bleeding disorder can reach an HTC, the full range of FDA-approved therapies, and a specialty pharmacy that knows what it is handling.